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International Journal of Special Education - старонка 22


References



References marked with an asterisk indicate studies included in the meta-analysis.

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*Courson, F. H. (1989). Comparative effects of short- and long-form guided notes on social studies performance by 7th grade learning disabled and at-risk students. (Unpublished doctoral dissertation). The Ohio State University, Columbus, Ohio.

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*Hamilton, S. L. , Seibert, M.A., Gardner, R., & Talbert-Johnson, C. (2000). Using guided notes to improve the academic achievement of incarcerated adolescents with learning and behavior problems. Remedial and Special Education, 21, 133-140.

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*Kline, C.S. (1986). Effects of guided notes on academic achievement of learning disables high school students. (Master’s Thesis) Retrieved from http://etd.ohiolink.edu/view.cgi?acc_num=osu1134064996.

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*Lazarus, B. D. (1991). Guided notes, review, and achievement of secondary students with learning disabilities in mainstream content courses. Education and Treatment of Children, 14, 112–127.

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*Mastropieri, M., Scruggs, T., Spencer, V., & Fontana, F. (2003). Promoting success in high school world history: Peer tutoring versus guided notes. Learning Disabilities Research & Practice. 18(1), 52-65.

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*Pados, G. E. (1989). A comparison of the effects of students’ own notes and guided notes on the daily quiz performance of fifth-grade students. (Master’s Thesis). Retrieved from http://etd.ohiolink.edu/view.cgi?acc_num=osu1163007290

*Patterson, K. B. (2005). Increasing positive outcomes for African American males in special education with the use of guided notes. Journal of Negro Education, 74, 311-320.

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*Sweeney, W. J., Ehrhardt, A. M., Gardner, R., III, Jones, L., Greenfield,R., & Fribley, S. (1999). Using guided notes with academically at-risk high school students during a remedial summer social studies class. Psychology in the Schools, 36, 305-318.

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*Wood, C. L. (2005). Effects of random study checks and guided notes study cards on a middle school special education students’ note taking accuracy and science vocabulary quiz scores (Doctoral dissertation). Retrieved from http://etd.ohiolink.edu/send-pdf.cgi/Wood%20Charles%20Lloyd.pdf?osu1123704588

*Yang, F. M. (1988). Effects of Guided Lecture Notes on Sixth Graders’ Scores on Daily Science Quizzes. (Master’s Thesis). Retrieved from http://etd.ohiolink.edu/send-pdf.cgi/Yang%20Feng%20Mei.pdf?osu1248383810

Needs of Parents Caring for Children with Physical Disabilities:



A Case Study in Jordan



Kholoud A. Al-Dababneh



Merfat Fayez



Hashemite University

Osama Bataineh



Yarmouk University

This study aimed at identifying the needs of families of children with physical disabilities in Jordan. The sample of the study consisted of 96 parents of children with physical disabilities whose ages ranged from 6 to 16 years old. A survey of Needs of Caring Parents was developed to achieve the purposes of this study. Results revealed that the most important needs identified by participants related to the dimensions of information and the involvement in the caring process, while the least important family needs related to the dimensions of counseling support and family support. Results also revealed that there were significant differences in the perceived needs of caring parents according to mother's vocational status (i.e., working or not working) in most of the survey dimensions. Yet, there were no significant differences in the perceived needs of caring parents that can be attributed to child's gender and age; family income range; and parents’ relations with their extended family. Based on the study results, different recommendations were offered to service providers and to pre- and in-service special education teacher training. This research must be considered as a starting step in inviting institutions which provide care for the children with disabilities to focus on meeting the needs of caring parents.

Having a child with a disability can have profound effects on the family and may place a set of extra demands, challenges and burdens on the family system as well as on the disabled child. Such experience affects the dynamics of the lives of all the other members of the family in different ways during the different life-cycle stages (Kirk, Gallagher, & Anastasiow, 2000), and can be either positive or challenging. A positive experience occurs when the family members develop acceptable and appropriate attitudes toward their disabled children, and are fully aware of their strengths and weakness points, especially when they become part of the success of their disabled child (Brown & Rodger, 2009). In contrast, caring parents experience challenges when they face the stressful behavior of their child, their own feelings of incompetence and their feelings of frustration with the caring system (Brown & Rodger, 2009; Roach & Osmond, 1999).
As reported in the literature, parents caring for children with physical disabilities (PD ) develop higher stress levels and lower levels of parenting satisfaction (Do Amaral, 2003; Puddy & Jackon, 2003). Moreover, parents caring for children with Physical Disabilities (PD), are at risk of developing numerous acute and long-term emotional challenges in comparison to families with no disabled children. They may express various levels and types of emotional reactions; including shock and disruption, denial, sadness, anxiety, fear, anger, and feel of guilt. They eventually go through an adjustment process, after learning to cope with having a child with disabilities and trying to work through their feelings (Johnson, 1993; Kirk et al., 2000; Neece, Kraemer, & Blacher, 2001). Yet, the time and support parents need for adjustment vary based on individual parents or families (Heward, 2006). In addition, caring parents may become forced to play additional roles as parents of children with PD. For example, in addition to their natural role, caring parents may become obliged to provide their children with intensive care, counseling, and education, support their children's behaviors, become their children's specialists, advocate for their children’s rights, act as financial providers and finally provide concerned specialists with the information they need to help them with their children’s cases (Heward, 2006).
Furthermore, literature suggests that parenting a child with a disability can be demanding and create many challenges. These challenges may include: children's behavioral challenges, involvement in caring, communicating with professionals, preparation and training, and social interaction (Brown & Rodger, 2009). Adding to these, other challenges like: feelings of incompetence, feelings of anxiety, facing financial difficulties, role changes, poor social adjustment, increase in social isolation during the family's life cycle (Heather, Desmond, & Maryalice, 2006) and frustration with the care system (Murray, Maslany, & Jeffery, 2006; Roach & Orsmond, 1999). Heather et al. (2006) added that caring parents might need to deal with a number of stress sources that are created through handling daily responsibilities, such as dealing with their child’s feelings about himself, and dealing with others’ reactions and attitudes toward them and toward their child with PD. So, the stress parents’ face affects their attitudes and makes them feel vulnerable to being criticized by others about how they deal with their child’s problems (Epel, Blackburn, Lin, Dhadhar, Adler, & Morrow, 2004).

In this field, Epel et al. (2004) suggests that caring parents need to develop their abilities in stress management. Many parents proved that stress can be successfully managed. Barakat and Linney (1992) also emphasized that the mother and her child adjustment depend on the maternal response to the stress of the physical disabilities, degree of social support and the ability to foster positive mother-child interactions. Moreover, literature indicated the importance of involving parents in caring to reduce the level of stress and challenges parents face when caring for a child with physical disabilities. For example, Adams, Wilgosh, and Sobsey (1990) reported that caring for children with disabilities might have a great influence on the life of the family members depending on the degree of direct involvement in caring.

In order to reduce the level of stress that caring parents encounter, to make their experience positive and to allow them to live gladly when raising a child with PD (Brown & Rodger, 2009), parents must recognize the various and complex needs of their child with PD (Blasco, 2001). Hence, it is necessary to help professionals gain the information they need to plan supportive services to meet parents' needs as well as the needs of their child with PD in an effective way (Brown & Rodger, 2009). Yet, literature emphasizes that only few studies have focused on identifying the needs of these parents from their realistic experience (Brown, 2007; Laan, Loots, Janssen, & Stolk, 2001). Some studies found that families of younger children with developmental disabilities perceived more needs, and despite the increasing interest they received from professionals in supporting them over the past decade, their needs are still not met (Carpenter, 2000; Ellis, Luiselli, Amirault, Byrne, O'Malley-Cannor & Taras, 2002). They also claimed that these needs increase continuously as the disabled child grows. Moreover, there were many parents who reported feeling an increasingly growing emotional and social distress (Ellis et al., 2002). According to Bromely and Blacher (1991), there is a lack of formal support presented to parents by professionals and lack of organized programs based on scientific research that survey the families’ needs. Therefore, we should first understand the needs of parents of children with PD in order to be able to meet them (Murray et al., 2006).

Literature on the needs of parents caring for children with physical disabilities

Within the literature on the needs of caring parents, there is evidence that parents perceived higher needs in the area of information that they desire to receive about the status of their child (Murray et al., 2006), and how their child recognizes the world around (Brown, 2007; Gardner, 2000). Caring parents need information to plan for the future of their child with PD (Gardner, 2000). Also, caring parents need information about how to deal with behavioral problems that their children with disabilities may demonstrate. Researchers like Brown et al. (2005), Darling and Baxter (1996), and Seligman and Darling (1989), have reported that parents need information about the nature of their child's disability, as well as about the programs that best support and meet the family members’ needs. Parents also reported that they need to understand the procedures of the social, health, and educational services and systems available for their children (Avery, 1999; Brown, 2007; Ray, 2005).
Burry (1999) found that there is a positive effect for providing parents with specialized training on parents' ability to raise a child with disabilities and on the attainment of skills and knowledge about the child's needs. Researchers also reported that caring parents benefit from the resources designed to help them find specialized medical and recreational services. In addition, they benefit from the programs providing information about centers of special education programs available in the local area (Redding et al., 2000; Zima, Bussing, Yang, & Belin, 2000).

Moreover, Bailey et al. (1999) found that support was considered to be more effective when it comes from formal resources. In this field, Carpenter (2000) and Brown et al. (2005) emphasized that families of children with PD need support from professionals who should understand and respect them. Yet, McConachie (1997) and Mason and Linsk (2002) pointed out that these families report lack of respect from the side of professionals who almost failed to provide them with the effective support they need. According to Jivanjee (1999) and Brown et al. (2005), caring parents report frustration as a result of the lack of organized communication between them, the medical system, the educational system and the various programs offered to their children with disabilities. Also, Farmer, Dorsey, and Mustillo (2004) added that the support services provided to the child and his/her parents should include coordination services to the various service systems available.

Theoretical and experimental literature emphasize that caring parents need to be deeply involved in the caring process and to work closely with professionals in the context of presenting services to their children with physical disabilities (Banyard, Rozelle, & Englund, 2001). They further need to acquire a variety of skills in order to be able to foster children with PD (Brown, 2007). Some of these skills include developing their abilities as educators, advocators and child behavioral managers (DeRobertis & Litrownik, 2004; Pithouse, Hill, Tout, & Lowe, 2002), besides the essential need for mastering strong parenting skills in general (O'Brien, Lutzler, & Campbell, 1993; Puddy & Jackson, 2003).

The parental stress has been found to have a strong relationship with the income of caring parents and their ability to meet their family's expenses (Paley, O'Connor, Frankel, & Marquardt, 2006). The presence of physical disabilities requires several supportive services that cost a lot of money, including medical, educational, psychological, physical and occupational services (Reilly & Platz, 2003; Vig & Kaminer, 2002). Also, caring for children with disabilities requires a higher financial ability compared to caring of children without disabilities (Able-Boone & Stevens; 1994, Curran, Sharples, White, & Knapp, 2001; Reilly & Platz, 2004; Swann & Sylvester, 2006).

Recently, researchers have focused on the psychological needs of parents caring for children with PD and how to meet them through providing them with the counseling support they need (Carpenter, 2000). According to Murray et al. (2006), the needs of caring parents which were most perceived as unmet related to counseling support. Counseling is considered helpful to parents as a formal supportive service. It helps them deal with stress and learn how to react to the behaviors of their physically disabled children. Furthermore, through counseling, parents learn how to manage their time and interact with their other children without PD (Mason & Linsk, 2002; Brown et al., 2005). Laan, Loots, Janssen, Stollk (2001) have also shown that many parents feel that having counseling support is very useful.

The type of support (i.e., formal and informal) are considered very important needs perceived by caring parents having children with disabilities according to literature. Formal group support comes from governmental support (Reilly & Platz, 2003), community-based services (Buelow, 2007), training (Burry, 1999; Myers, 1992), teachers and schools (Laurence, Webb, Okundaye, & Hafner, 2003; Paley et al., 2006) and from the educational system (Evans, Scott, & Schulz, 2004). Redding, Fried, and Britner (2000) reported some of the benefits of this type of support. These benefits included feeling understood and acceptable by others, learning new parenting skills, interacting with them and giving them the opportunity to exchange their feelings and concerns with people who can observe and understand them. In contrast, Duvdevany and Abboud (2003) found that informal social resources of support were related to parental well-being and that support presented to families from their friends, neighbors and other family members is crucial in determining their quality of life. Boaz and Muller (1994), however, provided powerful evidence proving that the need for long-term nursing is remarkably reduced when families receive both types of support (i.e., formal and informal).

Existing literature supports the notion that caring parents need various types and levels of support in order to cope with the presence of one or more children with PD. Such support includes: training, responsive professionals, respect, counseling services, comprehensive material support, information, community resources, social support from the community, financial support, an accommodating school system and good relationships with social workers (Seligman & Darling, 1989; Brown et al., 2005; Murray et al., 2006; Schormans, Coniega, & Renwick, 2006). Armstrong and Kerns (2002) reported that the need for health/medical information, professional support, community network support and involvement in the child's care were most likely to be unmet for families of children with physical disabilities.

To summarize, families of children with physical disabilities face several challenges and difficulties that affect their long-term quality of life. There is an observed relationship between the life quality of the family having a child with PD and the extent to which their needs are met. But despite the increased awareness of the importance of meeting the needs of children with disabilities, the awareness of meeting the needs of their caring parents is still limited. This, in turn, highlights the importance of identifying and determining the needs of families having physically disabled children. These needs should be addressed based on scientific research methods to enable providing families with the supportive services needed.

Significance of the study

Caring parents who foster children with physical disabilities undergo particular challenges which, in turn, may create many needs for the family that should be met. Meeting the needs of these parents may help in upgrading their quality of life which would, in turn, help in elevating the quality of life for the whole society. Research should gear more attention to identify the needs of parents having physically-disabled children. These efforts can be beneficial in building an efficient database to identify parents' needs and determine the unmet ones. This study, therefore, adds to the existing literature through exploring the particular needs of Jordanian parents caring for children with PD.

Furthermore, identifying the needs of caring parents can help the concerned institutions to generate possible solutions to meet parents' needs through planning the supportive services and developing the quality of these services. Institutions can benefit from the results of this study as they can take perceived families’ needs into consideration when planning services for those families in order to increase the efficiency of existing services (Marray et al., 2005).

Study objectives

This study aimed at identifying the needs of parents caring for a child or more with physical disabilities using a sample survey of those identified as being engaged in caring of such children. Specifically, the objectives of this study aim to define the needs of parents of children with physical disabilities in Jordan, and to find out to what extent the needs of these parents are being met, and to determine the best ways to meet the needs from the caring parents’ perspective. Therefore, this study implemented surveying techniques that include close- and open-ended questions to answer the following questions:

1. What is the level of needs of parents caring for children with physical disabilities in Jordan?

2. What are the most and least important needs identified by parents caring for children with physical disabilities in Jordan?

3. Are there significant differences among the dimensions of needs according to the following demographic variables: gender of the child, age of the child, mother's vocational status, family income and parents’ relations with their extended families?

4. What are the suggestions of parents caring for children with PD that they think would best help meet their unmet needs?
2014-07-19 18:44
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